Taking Charge of Fibromyalgia

May 7, 2001 -- Ten years ago, Donna Paduano was a self-described "thin, flabby secretary" who wouldn't be caught dead in short sleeves. "I had no muscle tone in my arms," says Paduano, 45. "I had stick legs, and a flat butt."

But that was before fibromyalgia forced her to get fit. "It's embarrassing for me to even say this," says Paduano about her life before her diagnosis, "but I would never, ever exercise. Go for a walk? You've got to be kidding."

Paduano's world changed in 1991, after she
learned she had fibromyalgia
. A little-known type of arthritis, fibromyalgia afflicts 3.7 million Americans, with symptoms that include chronic and often-debilitating muscle pain, insomnia, and fatigue.

Before she was diagnosed, Paduano was a legal secretary for a fast-paced New York firm. Each night, she'd come home to her two young sons and manage to do a few chores around the house before falling into bed, exhausted.

After her diagnosis, Paduano decided it was time to take charge of her life. She developed her own exercise program, moved to the San Diego area, and became a lecturer and certified fitness instructor for the Arthritis Foundation. She works out every day and meditates regularly, a transformation she credits in part to her disease.

"My pain turned into my passion," she says. "It really led me to the type of work that I was meant to do: Something helping others."

An Unusual Success Story

Unfortunately, stories about fibromyalgia don't always turn out this way. A disease that came to light in the 1980s, fibromyalgia is controversial and confusing, with symptoms that can mimic other ailments, such as chronic fatigue syndrome. For many patients, simply getting diagnosed is frustrating, involving multiple trips to various specialists.

There is no known cause for fibromyalgia, and effective treatments are few, although medical studies have pointed to the beneficial effect of cognitive behavioral therapy, low-dose antidepressants, and exercise for symptoms such as muscle pain and sleeplessness.

Depression and fibromyalgia often go hand in hand, causing some doctors to dismiss the muscle pain or insomnia as psychosomatic. In fact, some medical researchers question the very existence of the disease. In an article in the Nov. 13, 2000, issue of The New Yorker, Jerome Groopman, MD, who holds the Recanati Chair of Medicine at Harvard Medical School and is chief of experimental medicine at the Beth Israel Deaconess Medical Center in New York, wrote that some doctors consider fibromyalgia a "wastebasket" syndrome, or catchall for a collection of symptoms whose source is unknown.

Others are less polite: Writing in the May 2000 issue of the Swedish medical journal Lakartidningen, a researcher called fibromyalgia a "fin de siecle" disease -- the product of turn-of-the-century female anxiety.

Yet many physicians and fibromyalgia patients insist the ailment is real.

"Patients with [fibromyalgia] deserve our help," wrote Thomas Romano, MD, in a letter published in the Nov. 8, 1999, issue of Archives of Internal Medicine. "They truly suffer. ... They should not be discriminated against by any entity or group, least of all by the medical profession."

Paduano agrees that fibromyalgia can be "kind of a catchall," but says doctors often contribute to the problem, diagnosing the illness as a "female disorder," then failing to work with patients to find effective treatments.

Water therapy, for example, has helped many patients with fibromyalgia to control muscle pain and overcome the sense of isolation caused by a lack of mobility, Paduano says. But by and large, she says, physicians "know basically zilch" about such options.

A Difficult Road to Wellness

Like many with fibromyalgia, Paduano's path to diagnosis was a bumpy one.

Six months before she was diagnosed, Paduano broke her left knee. She had arthroscopic surgery, but instead of decreasing as her injury healed, her pain increased. Doctors diagnosed reflex sympathetic dystrophy (RSD), a type of nerve damage that can result in intense pain, swelling, and poor blood circulation. Severe as it was, to Paduano knee pain was nothing new -- she already was battling osteoarthritis, having undergone surgery on both her knees at the age of 15.

Yet things got worse. Several months after her diagnosis of RSD, Paduano began suffering from severe fatigue, plus muscle pain throughout her body.

"I told my doctors, 'My body just aches,' " Paduano says. It was "a different type of fatigue. ... My body would feel like it weighed a million pounds. I couldn't, like, lift my arm. [Some] days I would think, 'I can't even get out of bed. I can't even lift my head to get out of bed. What is wrong with me?'"

Paduano was sent to a rheumatologist, who diagnosed fibromyalgia using a method developed by the American College of Rheumatology, in which a doctor, using his fingertips, applies light pressure on various areas of the body to determine if there is pain.

Paduano was skeptical.

The rheumatologist asked if she was sore. "And I said, 'No, not really, it's just my arthritis joint pain,' " Paduano recalls. "And he literally just took his fingertips and was touching on my forearms, and the back of my shoulders, and I was reduced to tears. I couldn't believe it."

Further medical evaluation ruled out two other possible diagnoses, chronic fatigue and mononucleosis.

Soon after, Paduano consulted an orthopaedic surgeon, who concluded that Paduano's RSD and fibromyalgia were causing her to lose muscle mass in her thighs. Already, Paduano was on crutches, and doctors told her she was developing signs of osteoporosis.

Gently, Paduano's surgeon told her that she should prepare for the possibility that she would have to start using a wheelchair in the next few months.

But it wasn't long before Paduano decided she had to fight for her future. "Having kids was what kept me like a warrior," she says.

Strength Through Exercise

Paduano began going to the gym during her lunch hour, swimming or sometimes only walking through the pool to build up her muscles. At first, exercise was excruciating; in the mornings, she would take Vicodin, a powerful narcotic painkiller, so she could do thigh-clenching exercises.

Six months later, Paduano had gained a precious one-quarter inch of muscle mass in her thighs, and she no longer used her crutches. Her surgeon "was just reduced to tears" the next time he saw her, Paduano says. "And he said, 'I will never tell a patient again that they can't do something.' "

Paduano moved to Southern California and became a certified fitness instructor in 1995. She worked first for the Arthritis Foundation as an instructor in its PACE (People with Arthritis Can Exercise) program, and recently became the San Diego chapter's director of health promotions. She has also received an award from the International Association of Fitness Professionals.

Paduano rejects some conventional approaches to fibromyalgia, including support groups that encourage patients to talk about their frustrations. "My experience was that support groups for the most part are just a big pity party," she says.

Yet she acknowledges that it's tough to deal with a chronic disease, particularly one whose symptoms can be nearly invisible one day and incapacitating the next. In addition to Ultram, a prescription pain reliever she takes at night, Paduano takes Elavil, an antidepressant.

Paduano hopes someday to have her own pain-management clinic for patients who have fibromyalgia, along with other forms of arthritis and chronic pain. She foresees combining a traditional Western approach with exercise therapy and Eastern medicine, such as relaxation, meditation, and other nonpharmaceutical pain relief.

Dealing with chronic pain is "very different than breaking your arm, putting it in a cast, having that for 8 weeks, and then you're usually better," Paduano says.

"Chronic pain goes on, and fibromyalgia has different degrees, where some days you may feel OK, and some days you feel lousy, and you just feel like 'I can't even get out of bed.' That's when you need to force yourself, and that's when you need to exercise."

Beatrice Motamedi is a health and medical writer based in Oakland, Calif., who has written for Hippocrates, Newsweek, Wired, and many other national publications.